Tuesday, September 11, 2012

Not so great news from the CF CLINIC~

So, I took Trevor to his 3rd visit to the CF Clinic in the last month. It all started because on the first visit in August, his pulmonary function tests were at an all time low....blowing only in the 50's. ( His all time his is a 213). So we chalked it up to severe allergies. Also, his IGE level was high, but not as high as it was last November. They question whether he has the fungus Asperguillus. The last two clinic visits did not find any bacteria growing. They did not hear anything in his lungs.  He did another sputum culture yesterday along with another blood test and they should call today with the results. He only blew in the 50's yesterday, and they heard mucus in his lungs, so the bottom line is that they wanted to put him in the hospital for a week of IV antibiotics. Since he hasn't been hospitalized since he was 3 months old, I opted to try a couple of more weeks at home to see if we can get him better. This of course entails a very rigorous treatment schedule along with his meds.  They prescribed Kflex antibiotic and he is doing more time with his vest and albuterol nebs. He is also taking flonase, flovent, azythromicin, ursodol, allegra, periactin, and his 15 or so creon capsules everyday. If he has the Asperguillus, he will have to either take oral steroids(which could have side effects), or he would have to take IV steroids as an outpatient for 3 days ( he would have an IV in his arm for 3 days), or be admitted to the hospital for 3 days for IV steroids. It is frustrating, but we have always looked at CF as a challenge, not as a limitation. Trevor continues to excel at sports and school. He is amazing and he is a fighter! Some good news about Kalydeco, the new drug that was approved for one gene mutation of CF. They are currently working to get this drug approved for Trevor's gene mutation (Double Delta F508). The clinic is working with 18 year olds and above, so the next group will be 12-18 year olds and Trevor will be 12 in July. This drug has shown amazing results with CF patients and definitely could be the answer to our prayers! Until then, though, we will do our best to keep Trevor's lungs as healthy as possible! Am I heartbroken that I can't make Cystic Fibrosis just GO AWAY?  That I have to watch my son be out of breath after walking up 5 stairs?? Him being exhausted because he is not getting enough air YES, but I don't have the luxury of sitting around crying about it. We have to be strong and FIGHT! Trevor is the strongest willed kid that I know and I am so proud he is my son!